#especially now cuz dr put me on high risk

[ixchel-sketch]

 Dani and Rai’uk lineart

base by @dreaming-in-cryo / @2mucheyeliner

[drabbles-of-writing]

Reverse Au! Dump

Don’t mind my idea dumping here. Brain decided to have fun while I was at work and I have too many wips as it is, so… Thought I’d ask before I dumped, experience. Used morningmark’s comics as a base, so if you want reference. Now this isn’t all that well compiled, but here it goes.

~

Magic in the Other World is varied as it is crazy. So many styles over the generations and not a lot of organization. There are some that try to categorize it all, but that works as well as you’d expect. Some were lost, some erased, some weren’t passed down/recorded because “the power is all mine! Ahahaha!” It took a lot of time and collaboration, but eventually a sort of system was installed to help out. Still a lot of work to do, but its a step forward. Nowadays the term Wild Magic is generally reserved for those that aren’t all that well documented and understood.

Some Magics are very powerful and desirable, but also tend to be very high risk/high reward, kinda pass/fail, pretty literally Do or Die most times. So not a lot of people can use those or are even willing to. Story says this one guy named Odin hung himself on a massive tree by his own spear for nine days, no food water or rest in constant pain before he could unlock the secret of Runes. But it’s also said he gouged out his own eye to drink from the Well of Wisdom so… 

There are lots of different ways to channel magic too: wands, staves, jewelry, certain gems, familiars, potions, enchanted armaments, chants, scripts, etc. Each tool has its own advantages and disadvantages and play into a Witches’ style. Every Witch has at least two methods of spellcasting. Only children have one. Haven’t thought of how Luz gets her Palisman though. Maybe its one of those magic Artifacts like Dr. Strange’s cloak, Elder Wand, Thor’s hammer, or a Green Lantern’s Ring. Something that can’t be recreated because the secret is lost, materials no longer exist, too hard/dangerous to make, accident that can’t be recreated, etc. Happens more often than people like.

Camilla is sometimes called the Blue Witch. She’s a healer by heart and trade, but push her and she will become a one Witch Battleship. Bismark who? Aaaaand she just deleted a whole battalion. And the fortress behind them. Hide me. There are the very rare occasions, like count on one hand rare, when someone near and dear to her heart is in trouble that she takes up her other job. She’s especially terrifying when she decides to torture, those who know how to heal the body know best how to break it. Many shades of Blue, some are very close to Black. She doesn’t necessarily hate Humans exactly, but doesn’t have the highest of regard from past experiences.

Luz has training and is a proficient Witch for her age. Camilla and her father were adamant about having a general knowledge/skillset alongside her specialized skill. Jack of all trades and a master of none, still better than a master of one. She has gone through the system for her magic with varying success. Oracle magic? Zero talent. Bard classes? She can play an instrument, but can’t sing at the same time. When she does sing she tires too hard and messes up. It’s only when she doesn’t try, like absently singing along with a song or playing by her heart, that she’s good at it. Beasts? Can use them, but would rather play with them. Bleeding heart and all that. She does have a good handle on healing magic partly due to Camilla drilling necessary skills into her and partly osmosis. Her father arranged for some CQC lessons from an old friend of his which the girl loved. You get the idea. It wasn’t until she discovered Glyphs that she found her niche and her skills took off. Glyphs are one of those ‘eccentric’ or 'archaic’ styles since they haven’t been used in so long after being lost and are barely understood. She still has a long way to go, but she is on her way.

Luz never really had much in the way of friends, partly cuz of high profile parents which leads to certain pressures and a target on her head, partly because of her magic style and personality, and partly because of the trouble been going on. Luz grew up her whole life with this tension of a group of anarchists trying to burn society that’s just trying to do the right thing. The anarchists started small, but have been a growing problem the past few decades with talk how to 'reshape the world’ in not a good way. Anyone with critical thinking skills can tell this is a bad idea, but they are too brainwashed to notice. They harass anyone who doesn’t follow their rhetoric and attack anyone who even questions them. Luz’s parents put a real kink in a lot of their plans for years, which makes Luz guilty by association. 

Luz got caught in one of those sudden larger scuffles and was accidentally chucked/blown through a portal created by an attempted tactical retreat that went off course. Hence why she can’t go home because she hasn’t learned how to do portals yet. Those are high level anyway so how did these guys pull it off so easily? Luz has a hard time blending in obviously. Learning how to use a phone was a fun endeavor. Internet was a trip. Luz is amazed how these people can do all this cool stuff without magic. Keep a low profile sure, she can pass off as a weird out of town kid. Keep the beanie on, underperform in gym and stuff because some things don’t change, like genetics. Someone sharp eyed will see discrepancies. The Beanie has a small Glamor spell built in that covers her witchy traits but she forgot the ears which is why it sits like it does. Luz can erase memories in case she has an accident, but it’s less of a 'remove my face from this picture with a scalpel’, and more of a 'lemme just hack off the past hour or three from your brain with an axe.’ If she tries to take any more then she starts burning into some more dangerous territory and those Wiped are groggy and disoriented for a while after already. Then the magic attacks start happening and her heroic instinct/anti-bystander complex kicks in and there goes that. It runs in the family so Camilla isn’t surprised in the slightest when she finds out.

“Oh titan, why did you curse me with another me?” “I’m right here Mami!”

Eda has a shack very akin to Grunkle Stan. Lots of junk that Lilith can’t believe that people are dumb enough to buy. She’s also involved in some not so legal dealings on the side. Well, Eda isn’t actually hurting anybody and the tax dollars she should be paying would only go towards some politicians’ next yacht or another pointless overseas 'investment’ instead of where it’s supposed to go so. Eda does give some good intel on occasion and a place to vent so Lillith overlooks her. Lil’s more of the secret police for witches and a petty crook isn’t part of her job anyway. Eda understands Luz’s predicament and is willing to help. The cover story is that Camilla work in hospitals and has to work crazy hours while her dad passed away so is living with Eda for a while. King is that kind of critter that grew up weird and acts like ten different animals all the time.

Gus is the nerdy kid who infodumps on everybody, even if they’re not listening. Loves anything fantasy/sci-fi related and plays Minecraft too. A good kid at heart, but needs some social skills. Keep him away from anything more sugary than tea. Luz learned a lot listening to him. Not all of it is entirely useful, but still. Some of his ramblings give her some good ideas for magic and stuff, like putting Glyphs on cards.

The Blights are the cool rich kids obviously, and have some discipline and social issues. Big family name makes them intimidating for normies and a meal ticket for the unsavory. These kids need real friends. They decided to act out to get some attention from the parents who then decided to ignore them. “If you’re going to act like a child tantrum, get treated like one.” Ed is perfect for Drama classes, if he were allowed to partake. Can’t decide what Em is great at, hacking perhaps? Amity’s car is an inheritance from the only family to treat her as such Twins aside, even if she’s too young to remember it. She only remembers that she has feelings surrounding the car. All three of them were pretty impressed with Luz for standing up to them, calling them out on their shit, and not giving a crap about their family name. Being treated like a normal person is pretty weird. Can we get her to do that again?

Amity tried dating Boscha once, didn’t work out very well. Boscha is still hurting over Amity’s comment of “I’d rather go date the new weird kid (Luz) than go back to you.” It’s one of the reasons she goes after Luz. She has that kind of Bud personality from Spider Man, feels lesser and so acts out so much. 

“Wow, this new Witch is amazing. Not as cool as the original Witch.”

“What is it with the Witch with you?”

“Oh, she’s a hero. Looks out for the city and the little guy. She inspires me. Makes me want to be a bigger person. *sees Luz* What’s up Luz-er?”

~

And that’s what I got right now. I know there was more, but it’s lost to the void right now. Might come back later, maybe not. Lemme know what you think.

............

DAMN you weren’t lying when you said you had an info-dump this is *chefs kiss* you got me intrigued now

[not-poignant]

CANCER UPDATE:

I am actually sick with a cold at the moment. *thumbs up* This is the virus that never ends. It seemed like I was starting to turn a corner, and then it was like 'haha no, here's the sequel!' I'm unimpressed. Just imagine me staring into the camera like I'm in The Office.

A quick summary for those new to the game: I have the SDHD gene fault, also known as Hereditary PGL PCC, which is a hereditary genetic neuroendocrine cancer disease (the most inheritable genetic cancer disease in the world along with the other SDH~ faults). For me, it causes tumours called paragangliomas to grow primarily in the head/neck. I think of them as koalas clinging to my nerves and arteries.

I have a 50% chance of metastasis at any point, and this disease is incurable. I grew a very rare form of tumour called a carotid body paraganglioma at 18 that was removed. Now, at 35, I have three paragangliomas - a glomus vagale para (the rarest type, at a 1 in 5 million occurrence rate) called Thelma, a carotid body para called Louise and a glomus tympanicum or glomus jugulare para called Caramello that's currently too small to be seen on MRI, but has been spotted on the PET scan. I am very good at growing these paragangliomas and my ENT surgeon called me a ‘tumour machine’ and I call myself a ‘tumour incubation factory.’ Managing my case are: an Endocrinologist, a Radiation Oncologist, an ENT Surgeon, a Vascular Surgeon and a Neurosurgeon. (Or as I like to call them, a boy band).

(The rest under a Read More cuz there’s a lot).

It's been an interesting few days. Despite making noises about cancelling and rescheduling (Monday - Radiation Oncologist, Tuesday - ENT Surgeon, Wednesday - Neurosurgeon), I did manage to keep all of my appointments. So here's the deal:

I'm leaning towards choosing stereotactic radiosurgery (Cyberknife specifically) as the first and major line of treatment. This does not shrink the tumours, it doesn't make the tumours disappear, all it does - if it works - is make the tumours stop growing. Random fact for you, only 40,000~ people in the world have had Cyberknife radiosurgery! The only Cyberknife machine in Australia is here in Perth. It's similar but not quite the same as Gamma Knife radiosurgery.

The risks/side effects for low dose radiation to the head and neck, while still significant, are still way lower than what Dr. S helpfully called a surgery with 'high high morbidity.' The most promising risk is that there's less than a 1% chance of damage to the cranial nerves 9-12, and that any damage is likely to be temporary anyway. Dr. H (Radiation Oncologist) has seen about 20-30 patients with paragangliomas over a significant breadth of his career (more than any of my surgeons), and so he could report with some confidence on the kinds of side effects I could expect.

Obviously, the main side effect to radiation therapy is of course the chances of developing another form of cancer. I'm not one of those people who goes 'it's evil, it's poison.' I'm one of those people who goes: 'look, this is how sick I am, this is my best option, let's be realistic here.' Dr. H was very honest about this, and he said the biggest risk for me is thyroid cancer, because the carotid body paraganglioma is very near the thyroid. He even asked if I could get the carotid body para removed via surgery (I cannot for reasons relating to the internal carotid artery).

Even developing thyroid cancer is still a way lower quality of life risk than having the surgery, honestly. Especially since it's one of the more treatable forms of cancer, and I'll be under intense imaging surveillance for the rest of my life. They'll know, lol. To be honest, just having the genetic form of this disease and having recurring paragangliomas puts me at 50% risk of metastasis at any point of my life - the risk of radiosurgery giving me another form of cancer is actually WAY LOWER than just my...disease giving it to me randomly, for fun.

I've talked with a few other patients who have glomus vagale paragangliomas in particular, and all of them have recommended Gamma Knife or Cyberknife radiosurgery over 'lets open your whole head up' surgery. Those who've had the surgery, sometimes regretted getting it so soon, or talk about how many options there are now, citing such post-surgery affects like - total and irreversible loss of voice, stroke, suffocating/choking and vomiting every day, inabilities to swallow, and in one person, total baroreceptor failure (i.e. dangerous, life-threatening blood pressure spikes, followed by fainting from dangerously low blood pressure, many times a week - this is often highly unmanageable).

It does mean sort of readjusting how I'm thinking about these tumours. Instead of something to be evicted as soon as possible, I need to mentally wrap my head around the fact that I will likely have these tumours forever. These koalas are on the road with me now, and just permanent parasites that live off my blood, my resources, and generally don't do very much. Spiritually, I've been contemplating how well so much of nature tends to deal with parasites, or if not 'well' - it certainly tries to deal with them, and sometimes not through the process of elimination, so much as just...adjusting. Trees with their galls, still flowering year after year, and whole ecosystems that make it work. If anything, this situation makes me realise that the ecosystem of my body is much closer to those in nature that I respect, more than I've sometimes realised in the past.

We're in no rush to do radiosurgery. Right now, I have no major symptoms from the tumours, and both radiosurgery and surgery present side effects that are significant. So why do either? While it's much 'lesser' for me to be dealing with swollen ear canals, or likely losing my sense of taste for a couple of months etc. that's still...something I'm not dealing with right now and therefore, don't have to. Dr. H said it was all about the right timing, and that's what this journey is about now - the right timing for treatment/s.

Imaging in MRIs now show that the glomus vagale paraganglioma is currently not growing (YAY), and the carotid body paraganglioma has grown about a millimetre in a 6 month period. But Dr. H, the Radiation Oncologist, wants to wait to establish a definitive growth pattern before treatment. Basically, when we can start seeing signs of definitive growth, we'll treat them.

They won't get treated at the same time. In all likelihood I'll have one bout of Cyberknife/radiation for the carotid body first, possibly as soon as next year depending on how fast it's growing, and then I'll have another bout of Cyberknife/radiation for the glomus vagale when it starts growing or I start showing symptoms.

The third tumour - called Caramello - is likely a glomus tympanicum or glomus jugulare, is too small to be seen on MRI and we're leaving that alone for now. The most common side effect for that one is tinnitus and deafness.

I see Dr. W - my Endocrinologist - to confirm all of this in September. And then I will do nothing until 2018, where I'll get some more imaging done to look at growth rates (unless of course I start showing characteristic symptoms of the tumours, but so far, so good.)

Dr. S reminded me yesterday - after looking through my art journal and all of us, with the student doctor, having a good chat - I can always get the surgery in the future. I have options. There's a certain measure of stress that comes with living with tumours that can metastasise at any point, for the rest of my life. There's a certain measure of anxiety that comes from knowing I could grow more, knowing that I'm not someone 'rushing to get rid of cancer' so much as just...working on a chess board to stop it from ruining my quality of life, which is what matters most, of course.

Now, we wait for the tumours to make their next move, and then we parry and riposte - in hopefully a few years, and on it will go, until they win. Sometimes I think of it as 'death in slow motion.' But aren't we all dying in slow motion? So that's neither here nor there.

I've never been great at strategy, but I have some of the best doctors in the country on my side, helping me out, and I have a lot of faith in their care and their knowledge. More than anything, I also really respect how much faith they have in me and my knowledge. They all respect my own research, my thoughts, and Dr. Neurosurgeon today even said I came across as very philosophical. I expressed confusion at that, and he pointed out that most other patients in a similar situation would probably not seem as calm or cheerful.

But clearly he just hasn't caught me on a bad day. ;)

In the meantime, this is the last official cancer update for a few months I expect, unless Dr. W disagrees with my choice to privilege radiosurgery over surgery (he won't - given he pointed me in that direction in the first place). Hope you're all doing great, and as always, feel free to ask any questions since I can never explain everything properly in these (huge) posts anyway.